Here are some of my sons symptoms: of course the severe headaches, sleep apnea, nausea, sometimes vomitting, sometimes blurred or double vision, hoarse voice, memory problems, nosebleeds, problems coming up with a word, weak bladder (still wets bed at night sometimes), snoring…his chiari is 5 mm. He does not exhibit any of the physical deficits (weak arms, legs). He has a terrible time reading and focusing at school. The neurologist we saw at Seattle children’s was a resident neurologist (i did not know this until two weeks after our visit). It was her opinion that Shawn is experiencing migraine headaches and that the chiari is insignificant and questionable. We don’t have a pediatric neurologist or neurosurgeon so an adult neurosurgeon reviewed the MRI and “was not impressed”, which is why we. were referred to Seattle in the first place. The record that was forwarded to our pcp mentions “shawn having a repeat opthamology exam to evaluate for possible papilledema, given my somewhat concerning findings during limited exam here. the other consideration is possible pseudotumor cerebri, although the patient denies another possible etiology for his headaches”. This was not verbally mentioned during our visit with her. Does that mean stray have seen swelling of the optic nerve or disc on her examination? Before even seeing our pcp for Shawn headaches we tried several remedies: opthamology exam 4 times (normal all four times), tonsillectomy and adenoidectomy (actually for the sleep apnea but the ent said it would help his headaches) at which time the ent was concerned about his hoarse voice so she also performed a laryngoscope of his vocal cords which were normal, acupressure, acupuncture, and massage-all to no avail. Nothing has helped, the headaches continue to get worse. He has taken so much Tylenol and Motto. in his short little life I am scared that I am poisoning his liver. Our pcp, who is absolutely wonderful, is looking into sending us to the mayo clinic for a second opinion. I am frustrated… I don’t know if I should be happy he only has migraines or scared to death that we will become part of the system while my son suffers. Any opinions, advice or ideas are most welcome. .Thank you very much
Why not mayo if you don’t mind my asking. I believe the people that did the referral work from my doctor said we needed to start with a neurologist and the neurologist would refer us to a neurosurgeon if they deemed it necessary. My husband and I were both hoping the neurologist would send us to Dr. ellenbogen actually, but she discounted the chiari almost immediately.
Hi Sue,
First let me say: Please get your son a second Neurosurgical opinion. Preferably with a Pediatric Chiari Experienced Neurosurgeon.
I also have Optic Nerve Papilledema. I added a great link below. My cranial pressures caused my optic nerve to bend
& has caused me vision problems.
Like your son I have tried every possible Medical Specialty This breaks my heart. Please get a second opinion. If you would like I can help you find one in your area. Chiari Malformation's has many, many symptoms. The NS you saw should not have dismissed your sons symptoms. They are all Chiari symptoms. Your symptoms can be horrible without a large herniation or CSF Blockage. It took me consulting 52 Specialists & 5 years to get a CM diagnosis. I had to have emergency CM surgeries. I am not telling you this to scare you. It is just really important for your son that you are diligent and an assertive medical advocate for him. Please tell me how I or any of our Moderators or Members can assist you. I promise this is an Incredible group of people that have become a family of sorts out of necessity.
Tracy Z.
http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/10463.html
I seen neurosurgeon Richard Ellenboggen who is a specialist in Seattle…if u want his info let me know
Sadly time and time again we hear of nl who dismiss chiari. Your best hope is an NS and the recommendation above has a great reputation! Best of luck!